Something people often don’t realize about parents of children with extraordinary needs is just how heavy our load is. Our bags and purses are never light. We carry formula, syringes, medications, diapers, emergency protocols, datebooks, extra clothes, medical supplies, and more. At any given moment, I can reach into my backpack and pull out a spare g-tube button, a water flush, or emergency seizure medication. I can also find hand sanitizer or skin cream if needed, all without looking.
Our cars aren’t exempt either. Trunks are packed with extra supplies, along with our child’s wheelchair or stroller. Toys, books, and “just in case” items are scattered throughout, ready for any situation. I’ve learned my lesson: I always keep a small amount of cash in the glove compartment, just in case I forget my wallet and have to pay for parking entirely in coins after an appointment.
We carry a lot. Leaving the house is never simple. But what’s even harder than stepping out is the moment we go to bed and try to unload our shoulders.
First comes the worry. Did I make the right decisions today? Did I do enough, or did I push too hard? Did I spend enough time helping him with strength exercises, fine motor skills, or communication? Did I spend enough time simply being “mom,” rather than nurse, therapist, or advocate? Am I honoring his needs and wants? Am I doing this right? These questions can linger long after the house is quiet, and the worries are not easy to shake.
Then comes the fear. The “what ifs” take over. What if he’s catching a cold? Should I have avoided that crowded fair, park, or museum, where germs are everywhere? Will I regret the choices I made today? What if he never speaks a word? Or never walks? Or—heaven forbid—what if we lose him? Fear is a weight of its own, and unloading it at night can feel impossible.
Grief and sadness are constant companions, too. Grief over watching other children do what ours struggles to accomplish. Grief over the life we envisioned versus the reality we live. Sadness seeing him wrestle with tasks most children handle with ease. Sadness knowing there will be countless milestones he may never reach, everyday moments many parents take for granted. On some days, sadness refuses to leave, stubbornly clinging to our hearts.
And then there’s the rest: jealousy, anger, frustration, loneliness. These emotions can be difficult to unload, and sometimes they settle in until they feel like part of who we are.
But among these heavy loads are the extras—the most important ones. The ones I wake up each day determined to carry.
Every morning, I walk to my son’s room, lift his 40-pound body into my arms, and carry him downstairs. With each step, I feel more than just his weight. His grin tells me this is the highlight of his day. He wiggles and wavers, beyond excited to see me, and in that moment, I start carrying more than his body.
I carry gratitude. Deep in my bones, I feel it. I am thankful for the perspective he has given me, for the life we share, for the fact that he is mine—and alive. I carry joy. With him, joy is effortless. A glimpse of his face brings a smile to mine. Every accomplishment, no matter how small, is the result of his hard work, and every victory is cause for celebration. I love deeper than I ever imagined possible.
I carry pride. I am proud of him, proud of who he is, and proud of how he has shaped me. Watching his sibling relationships, seeing the life lessons he teaches without a single word, fills me with awe. I carry hope—hope that keeps me moving, keeps me breathing, keeps me believing.
Yes, we carry a heavy load. Some parts are unbearably hard to release. But alongside the burdens, there are beautiful extras that we hold tightly, gladly, every day. Gratitude, joy, love, pride, and hope—these are the things that make every step worth it.
